a family in the making

Month: July 2015

You guys, have I told you lately that I love you? For real. Your comments on my last post were just beyond. Not to mention my friends in real life that reached out to me as well. Thank you everyone. A million times over.

Last Tuesday I had my Skype consult with Dr. Braverman and found out the results of my immune testing. Basically, all the findings were consistent with endometriosis. This is pretty good news overall – there’s nothing else more sinister lurking on the sidelines.

Warning: I’m about to get very long-winded and detailed. I want to share as much as possible in case I can help anyone on the interwebs searching for information.

This does not mean I have any of these things–it just means I have the genes that would allow them to develop. Or something. I’m disclaimering right now that I barely understand all of this immune biz, so most of the explanations in this post will likely be at least semi-bogus.

Other things that are awry in my immune system:

My white blood cell counts are a little low. This is consistent with endometriosis, but I forget why.

My anti-cardiolipins are still testing as highly positive.

My natural killer cells and CD8+ T-cell levels are through the roof. Both are in the 98th percentile. Meaning, of all of Dr. Braverman’s patients, 2% of them have higher natural killer cells and CD8+T-cells than me. Whoa.

So why is this significant? Basically, both of these types of cells are totally normal. Everyone has them in their bodies. They fight off cancer, viruses and the like. But if they are too active, they see an embryo as a foreign body and kick it out.

To sum it up: I have endometriosis. This negatively impacts egg quality for a variety of reasons, two of the main ones being that it creates inflammation in the reproductive organs and also messes up the mitochondria in my eggs. This makes it really hard to produce eggs that actually turn into babies. Then, on the off chance that I do make a healthy embryo, the anticardiolipins, natural killer cells and CD8+T-cells kill it. On many levels, my reproductive system is – no, was – screwed! Was. It’s a whole new world now.

What Dr. Braverman suggests:

Luckily, everything that he found is straightforward to treat! Huzzah.

The first step is to remove the endometriosis, which I have already done.

Next, we wait two cycles in order for the inflammation to die down. I’m a little less than halfway through this.

Then he recommends another IVF cycle. As some of you know, I have an embryo still frozen at my old clinic. He said it’s not impossible, but very unlikely given what we know, that this embryo is genetically normal. So he recommended holding off on transferring that one for now.

After the IVF cycle we’ll freeze all embryos, ideally on day five. Apparently, the drugs from the IVF will make my immune response worse, so no fresh transfers for me. He then wants to do something called mitochondrial testing on the embryos. This is apparently a brand-new test. Instead of genetically screening the embryos, it tests only the mitochondria, which is apparently the most important factor for endometriosis patients. I’m not sure if we’ll do this yet. I need to look into it. He does not recommend traditional genetic screening.

Intralipid IV infusions (this is, like, straight-up fat, I think. I don’t even remember what it does, but it sounds like some mad scientist hootenanny. Sign me up!)

All of this will be done at our new clinic, with Dr. Braverman consulting on the frozen transfer. The new clinic is about an hour away from us, which is a major downer, but our old clinic won’t work with outside doctors, and this one does.

Other recommendations from Braverman for patients with endometriosis:

Cut out gluten (I’ve been gluten free for a year or two now, so we’re good there.)

Cut out dairy (I’ve also been dairy free for a while. Dr. B. says a little dairy every so often is fine. It’s not as much of an issue as gluten.)

Eat organic

Take a crapload of supplements.

Here’s the supplement list, if you’re interested:

Pycnogenol and Resveratrol (antioxidants that reduce oxidative stress and lower reactive oxygen species in the follicle, improving egg quality)

Melatonin (an antioxidant — it has been shown in the literature to increase the number of FSH receptors on the follicles in patients with endometriosis. I may not be able to stick with this one, btw, as it appears to be exacerbating my asthma)

VSL#3 probiotics (to lower the level of inflammation by increasing the production of IL10 in the blood. If anyone knows what IL10 is, let me know.)

Fish oil with Omega 3 (didn’t get an explanation for this)

Mitochondrial optimizer (helps to improve mitochondrial function in the egg, which increases the competence of the nucleus. This leads to higher euploid rates and better embryo performance)

Vitamin D3 (to help decrease natural killer cell activity)

Greens formula (didn’t get an explanation for this)

General notes:

He said that, after surgery, I have about a one-year window until the endometriosis comes back.

His official word is that one cup of coffee a day and drinking socially is fine. He’s firmly in the everything-in-moderation camp. So, guess what guys? If I want a friggen glass of wine, I’m having a friggen glass of wine. No more guilt!

He called me young! Well, kinda. When I asked him if I should be taking DHEA, he was all, “That only works for older women, not women who have diminished ovarian reserve for other reasons.” Consider my life made. It’s not often that 38 is classified as a younger woman in the fertility world. I’m taking that and running with it.

Whew! Are you still awake? I am, but only barely. If you’ve read this far, you are a rock star.

And with that, I’m signing off. Must go to bed. Tomorrow we meet the doctor at our new clinic for the first time. I hope we like him (and the clinic) because we really don’t have much choice in the matter.

Well, here I am. A little less than two weeks post surgery. I’m feeling much better physically.

But mentally, yikes. If you could see my thoughts right now, you’d be like, whoa. They’d be all black clouds and evil robots and scary vintage dolls with those flip-lid eyes and I don’t even know what else.

Things were ok for a while. Initially after the surgery I felt relief. It’s over, hooray! I have endometriosis, hooray! It may seem strange to feel relieved upon finding out you have an incurable disease, but I was just glad that we finally had some answers. So many things were explained: the spotting before my period (endometriosis on my cervix), frequent urination (endometriosis on my bladder), the pain in my lower right side that doctors had been dismissing for years (endometriosis on my ovary) and my crap-quality eggs (endometriosis everywhere). And even better, all of it was removed! (P.S. the surgeon did remove the endo on my ovary – in my anesthesia-addled state I misheard the him.) For the moment at least, I am endometriosis free!

I was also feeling happy with myself. Happy that I kept searching and digging until I finally got some answers. That I didn’t give up. That I trusted my gut and listened to Dr. Braverman when he told me to get surgery after a ten minute phone consult. I was like, well, this is totally crazy, but I think he’s right so I’m going for it.

And he was right. We both were.

So yeah, I was feeling pretty good for a few days, despite the pain.

But then, I don’t even know what happened.

Maybe it was the fact that recovery was worse than I’d expected.

Maybe it’s because, as relieved as I was, it started sinking in that I have an incurable disease. Yes, the endometriosis is gone, but it usually comes back at some point.

Maybe it’s because, despite my very best efforts, I can’t seem to get my stupid teeth situation under control. Like, I can’t remember a time when my teeth didn’t hurt. One gets fixed and another one gets jacked up. It’s never ending.

Maybe it’s because we’ve been going at this babymaking crap for over two years.

Maybe it’s because I’m staring down the barrel of our last IVF. One final chance and that’s it.

Maybe it’s because after all of our talk of adoption, I don’t know if that’s truly going to end up being a valid option for us. We don’t have the cash up front right now to make it happen, so we’d have to either borrow money, clear out our dire-emergency-only funds, save for years or a combination of the three. Not to mention the fact that this fertility journey has already taken a toll on my relationship with Tim. We’re not headed to Divorce City or anything like that, but I think we both agree that we’ve seen happier days. What would another two or so years going through the adoption process do to us? Yes, I want another child more than almost anything, but not at the cost of my marriage. I’m not saying adoption is off the table, but it’s certainly going to require further discussion and exploration.

So when all is said and done, we may end up without another child. Which means we would have spent years on this journey with nothing to show for it — nothing good anyway. Two dead babies. A sharps container full of needles. A strained marriage. Not to mention that I’m now the kind of person who rolls my eyes when I see a pregnancy announcement — so essentially I’ve become someone who begrudges others their happiness. And I’m sure I’m a worse parent to Lettie than I would have been if I didn’t go through any of this stuff. How many times have I been obsessing about my fertility, or lack thereof, instead of being in the present moment with the amazing child that I already have? How many times? Just thinking about it makes me want to cry my eyes out. She deserves better than that. Tim deserves better than a wife who’s anxious, upset and preoccupied all the time.

And there it is, the root of why I’ve been feeling so low lately: maybe I’ve fought valiantly for the last two years, but I’m not sure I like the person I’ve become.

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